HI everybody - new member
Had the colonoscopy a month ago and found out I have a mass, but. I feel fine. I'm 45, swim a lot, hike, walk everywhere. This hit me from behind and I'm still in shock. I'm not sick, so how could I be so invaded?
I see the oncologist on Wednesday.
Any advice? I've been reading through the forum and you all sound hopeful and positive, and it seems there are a few of you who are/were Stage IV but are doing well. Stage IV, according to the internet, has a 6% survival rate, however the ACS website has the disclaimer that most people are old when they get it and probably die of other causes...
What exactly does "chemo for life" mean??
many thanks
Comments
-
WELCOME
Hello Karen, Welcome to this board. Ask any question you might have and someone will give you the best answer possible.
There are a few stage IV cancer survivors here and I am sure that you will hear from them.
I preach to take it One day at a time.
Yes, I play Bejuweled also, it helps when I cannot sleep and up in the middle of the night.
"Chemo for Life" means that you will be on a dose of chemo for as long as you live, to keep you stable.
Please let us know what your Oncologist said.
You will be in my prayers,
Hugs,Marjan0 -
Hi Karen
Welcome to the board and I'm very sorry that you had to join our little "club" of Stage IV warriors. At this early stage of your battle you show a great attitude and sense of humor. That's very important. Something that you might want to do is get a pocket size memo pad and write down any questions for your oncologist that come to mind, no matter how insignificant they might seem. These first few meetings with your team will be just about the most important of your life, so you'll want to make notes for future reference. I will add you to my prayers and wish you strength and good luck in your battle.
Doc/Ray0 -
thanks both of you! this isDoc_Hawk said:Hi Karen
Welcome to the board and I'm very sorry that you had to join our little "club" of Stage IV warriors. At this early stage of your battle you show a great attitude and sense of humor. That's very important. Something that you might want to do is get a pocket size memo pad and write down any questions for your oncologist that come to mind, no matter how insignificant they might seem. These first few meetings with your team will be just about the most important of your life, so you'll want to make notes for future reference. I will add you to my prayers and wish you strength and good luck in your battle.
Doc/Ray
thanks both of you! this is all so new, but having you "warriors" posting on the boards and surviving for a long time is motivating and inspiring to us newbies, and gives us (me) hope!0 -
thanks both of you! this isDoc_Hawk said:Hi Karen
Welcome to the board and I'm very sorry that you had to join our little "club" of Stage IV warriors. At this early stage of your battle you show a great attitude and sense of humor. That's very important. Something that you might want to do is get a pocket size memo pad and write down any questions for your oncologist that come to mind, no matter how insignificant they might seem. These first few meetings with your team will be just about the most important of your life, so you'll want to make notes for future reference. I will add you to my prayers and wish you strength and good luck in your battle.
Doc/Ray
thanks both of you! this is all so new, but having you "warriors" posting on the boards and surviving for a long time is motivating and inspiring to us newbies, and gives us (me) hope!0 -
welcome Karen
I'm very sorry about your diagnosis. You will find comfort here. I am new too, having just finished radiation and chemo for stage III Rectal cancer. I am scheduled for surgery in 6 weeks. Please know that you are not alone and that your head WILL clear soon. Those first few days are all about putting one foot in front of the other. Take someone with you to every appt. Ask them to take notes for you. Do not wander too far onto the internet. Rest. Eat well. In a few days the fog will begin to clear and you will feel much more engaged.
Stay in touch and let us know how you're doing.
We've all been there, and we know it sucks.
Robin0 -
Welcome
Sorry you had to find this board but you will find a lot of caring and knowledgeable people here. You will find that the next couple of months will be a rollercoaster of different appointments, tests, continued confusion and questions. Please try and bring someone with you to appointments as your head will be reeling and you might not hear everything correctly or forget what was said. If you aren't happy with your doctors, don't hesitate to get a second opinion as this is your life that they are dealing with. Welcome to the boards and ask away about anything as with us we have discussed everything. Losing our modestly comes fast. Good luck with your appointment.
Kim0 -
hello
I'm a 3 year stage 4 colon rectum liver lung person. This is a great place to learn and relate to others experiences on this crazy cancer ride. There are tons of ups and downs with this ride. A good attitude helps and a good support group helps. I'm. A chemo for life at this point which means some sort of treatment unless something else comes up. We have to pray for science to come up with a solution. You'll get lots of opinions here which is good. On bad days stay in touch. Pray for you and everyone else on this trip. Jeff0 -
starting fast
One of the insidious things about CRC is often feeling ok until late. Cancer is a molecular disease, it can be stopped through surgery, and biochemistry. But you have to work to stay ahead of it, "shopping" is not "one stop", obstacles occur, and mistakes do get made.
The things that we are very glad we did include getting blood tested for CEA, CA19-9, vitamin D and doing cimetidine for surgery for at least a few weeks after (actually part of chemo for life for my biomarker targeted wife). You might be very glad to read several Life Extension articles on cancer and colorectal cancer [see several links].0 -
Hello Karen
I see you already received the info on 'chemo for life", that is what they told me two and half years ago, told I would not get surgeries, etc. I've had the surgeries and am currently NED and off of chemo, I attend college full time, and I'm 53 years old. Had a colon/liver/ureter resection, stage IV.
So what I'm trying to say, is if they told you chemo for life, don't let that get you down, even when I thought it was chemo for life after getting over the shock of it after a few months (took me a few because they told me I had 4 to 6 months to live as well, so I was a bit freaked out about it all) I knew I could do it if I had to, I just got off of chemo 4 months ago (due to non-cancer related heart problems) and am doing just fine.
Welcome to the board, as others have said I'm sure, sorry you have to be here, but feel welcome to ask any questions any time, someone is sure to answer as best they can.
Oh, and be careful, start out slow, some people tend to go off the deep end immediately searching for cures that don't exist, talk with your oncologist, your family and researching is often a good idea.
Take care, take heart.
Winter Marie0 -
Sense of humour
Gland to see yo can still laugh- that will take a you long way in this new part of your life. I am stage 4 and have cancer dignosed since 2004. There is a lot that can be done both surgically and medically for you and a range of other ways of fighting this that complement the mainstream medical approach- explore and gain knowledge and find what is right for you (no one else can tell you that bit).
Chemo for life is almost as hard to hear as the term 'cancer' and almost as meaningless as it has a huge range of meanings. For some of us we are on and off chemo as a way of controlling the progression of this illness in the stage where there is no clear cure. Chemo in stage 4 is unlikely to cure you (the only real curative procedure is surgery for the lucky few stage 4s who have very localised mets) but it can hold the disease and often reduce it in size- sometimes to no longer being visible on scans so there is 'no evidence of disease' (NED- not necessarily no disease but none that can be seen on scans and other tests). Chemo is also a huge range of drugs with a range of benefits and side effects that are very individual.
You are young, fit and otherwise healthy. You have a good chance of staying that way for some time. At the moment the priority is getting good medical/ surgical opinions to develop a clear treatment plan. Get the knowledge you feel you need to be in control of your situation and take some time to allow yourself and the people close to you to adapt to this news. Getting your head in shape will be just as important as getting your body in shape.
This is a great place to start,
steve0 -
thanks all! Glad to be partsteved said:Sense of humour
Gland to see yo can still laugh- that will take a you long way in this new part of your life. I am stage 4 and have cancer dignosed since 2004. There is a lot that can be done both surgically and medically for you and a range of other ways of fighting this that complement the mainstream medical approach- explore and gain knowledge and find what is right for you (no one else can tell you that bit).
Chemo for life is almost as hard to hear as the term 'cancer' and almost as meaningless as it has a huge range of meanings. For some of us we are on and off chemo as a way of controlling the progression of this illness in the stage where there is no clear cure. Chemo in stage 4 is unlikely to cure you (the only real curative procedure is surgery for the lucky few stage 4s who have very localised mets) but it can hold the disease and often reduce it in size- sometimes to no longer being visible on scans so there is 'no evidence of disease' (NED- not necessarily no disease but none that can be seen on scans and other tests). Chemo is also a huge range of drugs with a range of benefits and side effects that are very individual.
You are young, fit and otherwise healthy. You have a good chance of staying that way for some time. At the moment the priority is getting good medical/ surgical opinions to develop a clear treatment plan. Get the knowledge you feel you need to be in control of your situation and take some time to allow yourself and the people close to you to adapt to this news. Getting your head in shape will be just as important as getting your body in shape.
This is a great place to start,
steve
thanks all! Glad to be part of this community.0 -
thanks all! Glad to be partsteved said:Sense of humour
Gland to see yo can still laugh- that will take a you long way in this new part of your life. I am stage 4 and have cancer dignosed since 2004. There is a lot that can be done both surgically and medically for you and a range of other ways of fighting this that complement the mainstream medical approach- explore and gain knowledge and find what is right for you (no one else can tell you that bit).
Chemo for life is almost as hard to hear as the term 'cancer' and almost as meaningless as it has a huge range of meanings. For some of us we are on and off chemo as a way of controlling the progression of this illness in the stage where there is no clear cure. Chemo in stage 4 is unlikely to cure you (the only real curative procedure is surgery for the lucky few stage 4s who have very localised mets) but it can hold the disease and often reduce it in size- sometimes to no longer being visible on scans so there is 'no evidence of disease' (NED- not necessarily no disease but none that can be seen on scans and other tests). Chemo is also a huge range of drugs with a range of benefits and side effects that are very individual.
You are young, fit and otherwise healthy. You have a good chance of staying that way for some time. At the moment the priority is getting good medical/ surgical opinions to develop a clear treatment plan. Get the knowledge you feel you need to be in control of your situation and take some time to allow yourself and the people close to you to adapt to this news. Getting your head in shape will be just as important as getting your body in shape.
This is a great place to start,
steve
thanks all! Glad to be part of this community.0 -
Karen:
Sorry you have to be here. My hubby is Stage IV, transverse colon tumor, multiple and large tumors on liver and some on lungs. At diagnosis things were pretty grim. Well, here we are 3 plus years later and George is doing relatively well all things considered. He recently retired from working but did work through the first 2 plus years.
Hang in there. My personal opinion only, make sure your oncologist is well educated and experiened in treating colorectal cancer. Forget about personality, who cares about that anyway, you want his/her skill, education and experience. I personally feel that makes a difference, it did for us.
Take care - Tina0 -
welcomegeotina said:Karen:
Sorry you have to be here. My hubby is Stage IV, transverse colon tumor, multiple and large tumors on liver and some on lungs. At diagnosis things were pretty grim. Well, here we are 3 plus years later and George is doing relatively well all things considered. He recently retired from working but did work through the first 2 plus years.
Hang in there. My personal opinion only, make sure your oncologist is well educated and experiened in treating colorectal cancer. Forget about personality, who cares about that anyway, you want his/her skill, education and experience. I personally feel that makes a difference, it did for us.
Take care - Tina
Welcome karen....when i read your first post, I thought now here is a cracker jack!!!! In Canadian speak that means you are filled with great attitude and spunk girl!!! Love to see a sense of humour shining through.....my computer just told me I had misspelled humour...but we Canucks just won't give up that "U"
Karen you have a great deal on your plate.....you are just at the beginning of a long long road but you are very young and very strong....
I will just send you love and a hug and say YES!!!! there a lots of Stage IV warriors here and we are surviving and thriving....
Welcome dear girl.....
maggie0 -
Welcome!
Welcome! First our thoughts and prayers are with you!
I went in for a stomach ache, and was told I need surgery immediately. They thought I had an infected appendix. I was told after surgery that I had Cancer. I too am active. I was an active Mtn Bike Rider and Hiker. Walked my dogs 2 miles every morning and again in the evening.
Visit with a couple of Oncologists. The attitude of your team will have a lot to do with your well being. Find a team with experience and that is open minded to all treatments for cancer.
Read about Anti Cancer Diets, exercise, and get soft toilet paper. lol Mental Health is as important as any chemicals and diet. Keep positive and find ways to keep mentally active.
Best Always, mike0 -
Welcome
Caregiver here. Sorry you had to be here. The stats on the internet are old. Stage 4 is serious but you're here now. My wife was 46 at diagnosis, S4 CC, no symptoms, and will be coming up on 3 years post diagnosis next month.
Hang around, share your experience, and good luck.
Best to you.0 -
thanks!here4lfe said:Welcome
Caregiver here. Sorry you had to be here. The stats on the internet are old. Stage 4 is serious but you're here now. My wife was 46 at diagnosis, S4 CC, no symptoms, and will be coming up on 3 years post diagnosis next month.
Hang around, share your experience, and good luck.
Best to you.
I am actually Karin. Autospell can be annoying, if you don't watch what you type. You don't want to know what the software does to my last name..
My clinic is really nice and homey, and has a good vibe, like they really care about patients. I went for a pre-chemo orientation/briefing yesterday. I get my borg implant (the port) on the 2nd and start chemo (Folfox and then Avastin after the third cycle) the next day. I'll have chemo for six months, and hope for the best. My primary tumor has metastasized to my liver and lungs - liver tumors are islands and the lung tumors are pebbles. At stage iv, my prognosis isn't great, but the doctors can't say for sure because there isn't much data on this type of cancer occurring in younger people. If I get five more years, that would be great. More would be okay too. If I do nothing, I would be dead in a year, which is heartening in a way, because at least I won't be dead in 2-3 months or something like that. I'm happy about that. But we'll see if the tumors shrink. Anyway, that's that, I guess.
I am a gardener, and the chemo treatment to me seems like spraying weeds with weed killer - every two weeks, a big dose of round up, you know?
My friends (whom I've just told) are emailing me all sorts of advice - the best nugget recommended medical marijuana. My BFF said to eat lemons, which I will do. Interestingly, my initial nurse at the clinic said not to take vitamin supplements, as that would also fuel the cancer. wow. I never would have known that, and probably would have doubled my one-a-days. I might cut down on sugar, since if the PET scans "feed" the fast growing cells with radioactive sugar, wouldn't it follow that sugar in food would also be attractive to such cells? i will ask about that - probably it's not to make up one's own treatment plan...
the adventure begins. sigh. cheers, all0 -
Karinlilacbrroller said:thanks!
I am actually Karin. Autospell can be annoying, if you don't watch what you type. You don't want to know what the software does to my last name..
My clinic is really nice and homey, and has a good vibe, like they really care about patients. I went for a pre-chemo orientation/briefing yesterday. I get my borg implant (the port) on the 2nd and start chemo (Folfox and then Avastin after the third cycle) the next day. I'll have chemo for six months, and hope for the best. My primary tumor has metastasized to my liver and lungs - liver tumors are islands and the lung tumors are pebbles. At stage iv, my prognosis isn't great, but the doctors can't say for sure because there isn't much data on this type of cancer occurring in younger people. If I get five more years, that would be great. More would be okay too. If I do nothing, I would be dead in a year, which is heartening in a way, because at least I won't be dead in 2-3 months or something like that. I'm happy about that. But we'll see if the tumors shrink. Anyway, that's that, I guess.
I am a gardener, and the chemo treatment to me seems like spraying weeds with weed killer - every two weeks, a big dose of round up, you know?
My friends (whom I've just told) are emailing me all sorts of advice - the best nugget recommended medical marijuana. My BFF said to eat lemons, which I will do. Interestingly, my initial nurse at the clinic said not to take vitamin supplements, as that would also fuel the cancer. wow. I never would have known that, and probably would have doubled my one-a-days. I might cut down on sugar, since if the PET scans "feed" the fast growing cells with radioactive sugar, wouldn't it follow that sugar in food would also be attractive to such cells? i will ask about that - probably it's not to make up one's own treatment plan...
the adventure begins. sigh. cheers, all
dearest Karin....when you said that I immediately leaped to Karin von Bixen and Out of Africa.....sorry.....you mentioning the name just did it.
okay......you are doing so well.....fofox ....lots and tons of advice here....that little oxy drug can be nasty but we can talk about that much later....
I can hardly believe how well adjusted you sound...yes it is an amazing adventure. Do not think for one second that you have five years or two years or one year....you have the rest of your life....this is just the beginning Karin....you can do anything....I really mean that....no one knows how it will go
Karin that is the good thing about this forum....stage IVs here...i am one with death diagnosis....7 years on.....
cheers to you dearest girl....sigh
mags0 -
Welcome
This board is great, even though we are here because of a common illness none of us really wants. There is no question that does not seem to have someone who can help; or offer good positive suggestions.
I am also new as a Stage IV CC (post surgical intervention in 2009) with large met (tumor) in the liver. I have been lurking or cautiously posting since diagnosis in April. Started Chemo within three weeks of diagnosis and seem to be pending surgery middle of next month or later. Diagnosis knocked the whole family and extended family to our knees; totally unexpected. I still try to work full time and exercise less than I should.
Once again glad you are here and welcome. ((Hugs of comfort and confidence))0 -
Welcome Karin. I am stage
Welcome Karin. I am stage four and have been NED since last May. When i first started here i would go read peoples "about me" pages.
Many heroes here.
Good Luck and visit often, to rant, to share how things are going with you and to just get your questions answered.Most of all for support and to know you are not on this journey alone. We are all here for you.
Hugs,
Judy0
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